Rockford area woman representing seven generations at annual ALS walk
ALS has plagued Michelle Francis' family for nearly 200 years.
Francis, a mother of two adult children, represents the seventh generation in her bloodline who has been diagnosed with the fatal neurodegenerative disease. She prays that through intervention, the disease will finally stop with her.
If not, she is hoping for the next best thing:
"I'm really hoping that it will become a disease that will be manageable and livable, like diabetes," she said.
For that to happen, more research must be done.
For more research to be done, Francis walks.
Raising funds, awareness
On July 9, Francis will be participate in the ALS Association’s Northern Illinois Walk to Defeat ALS in Byron. She will be rolling in her wheelchair for herself and in honor of the more than 65 members of her family who have had or are living with ALS.
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The annual event aims to raise awareness and funds to support research and people living with amyotrophic lateral sclerosis, a progressive neurodegenerative disease that affects nerve cells in the brain and spinal cord and slowly robs a person of their ability to walk, speak, swallow, and breathe.
ALS is more commonly known as Lou Gehrig's disease, named after the New York Yankee hall of famer who died from the disease in 1941, just two years after his diagnosis.
The average life expectancy after diagnosis is two to five years.
Francis got her diagnosis on June 1, 2019.
"From my family history, our lifespan is usually 11 years," she said. "Some have died at six years. My brother has had it for 18 years, and he's doing better than me."
Hope in new drug
While there is still no cure for ALS, Francis' hope is buoyed by the fact that since April, she has been taking QALSODY, a new FDA approved drug that attacks the SOD1 protein, the main cause of ALS in her family.
Francis said research has shown it takes six to 12 months to see results.
"Hopefully, it will slow it down or stop it," she said.
Meanwhile, research regarding QALSODY being a preventative drug is still ongoing.
"If they get a lot of data, they may be able to even give it to people that have the gene but don't have any symptoms yet," she said. "I'm just hoping if it's not going to save me that it will save generations after me."
As for her two children — Justin Francis, 34, organizer of the annual SOAR Awards in Rockford, and her daughter, Yvonne Sherrill, 25, her primary care giver — neither have undergone testing for the disease.
It's a personal decision that's typically held off until symptoms arise, Francis said.
"When you have genetic testing, you have to go through counseling to make sure you can deal with having it or not having it, especially if you have anger," she said. "Or if you don't have it but a sibling does, sometimes there is a lot of guilt with that."
To donate, visit Francis' personal page at web.alsa.org/goto/michelle_francis.
Chris Green: 815-987-1241; cgreen@rrstar.com; @chrisfgreen
This article originally appeared on Rockford Register Star: Rockford area woman is seventh generation in her family with ALS
